Walking to Help Others

Teen with a Primary Immune Deficiency raises awareness of the rare disease.

By Maureen Powell
11 Jan 2018

Aidan Walsh (center) walks to support the Immune Deficiency Foundation at the organization’s walk in Wheaton, Ill.

When Amy Walsh first visited CSL Behring to tell her son’s story, a string of colored beads snaked around the conference table, each bead telling the story of a family’s desperate search for a diagnosis for their first-born son. Each bead represents a time when Aidan was sick, was hospitalized, or received some test or treatment on the journey to his diagnosis.

Aidan, 16, suffers from a variant of Severe Combined Immunodeficiency (SCID), the most severe of the Primary Immune Deficiency diseases. The defining characteristic of SCID is the absence of T cells and, as a result, lack of B cell function as well. With the help of T-cells, B-cells make special Y-shaped proteins called antibodies. Antibodies stick to antigens on the surface of germs, stopping them in their tracks, creating clumps that alert your body to the presence of intruders. SCID is often called “bubble boy disease” after David Vetter, a boy with X-linked SCID, who lived for 12 years in a plastic, germ-free bubble before his death in 1984.

Life was tough for Aidan in the early years. He remembers overnight hospital stays at least once a month and missing a lot of school.

“I had a lot of problems growing up,” Aidan says. “I always had a cough; several times I also had chronic gastrointestinal problems and other chronic infections. In trying to fight infections, my weak immune system sometimes mistakenly made antibodies against parts of my own body, which attacked my blood cells, skin and nervous system. By the time I was 6 years-old, I had a bone marrow transplant.”

Life looks much different for Aidan today. The high school junior has his driver’s license and is on the golf team. He’s improved significantly thanks to his bone marrow transplant and subcutaneous immunoglobulin therapy which replaces the missing antibodies. “I can manage my own health—I have control over when and where I infuse my medicine.”

Employees at CSL Behring’s Kankakee manufacturing facility first met Aidan when he was 14. He and his mom, Amy, visited the manufacturing site to share Aidan’s story and to see where the therapy he takes gets its start. Since then, the Walsh family has become part of the CSL Behring family, attending the annual summer picnics and the CSL 100th anniversary celebration in 2016.

While they’ve stopped stringing beads, the Walsh family continues to advocate for those who suffer from immunodeficiency disease.

Aidan’s mom, Amy, has been involved with the Immune Deficiency Foundation (IDF) for several years.This year, Aidan became a teen advocate with the group.

“Team Aidan” has participated in the IDF Walk for Primary Immunodeficiency in the Chicago-area for the past few years.CSL Behring’s Kankakee plant’s Giving for Good committee, which organizes the site’s charitable donations, designated IDF as the program’s beneficiary for the third quarter of 2017.Remembering the IDF walk in October and the participation of Team Aidan, the committee was quick to put the two together and present their fundraising proceeds to Team Aidan.

“I first met Aidan at our centennial celebration,” remarked Tricia Stewart, Senior Vice President and General Manager at the Kankakee site, “It was a pleasure to partner with him and his family for the IDF walk. We love having him visit the site as it reinforces our commitment to our patients.”